Mom, Empty Nester, RRP, Christ Follower, Friend, Food Lover

RRPF

There’s so much to update on, that I honestly don’t know how to compose everything into anything that would resemble a coherent post. So, I sit here wondering do I just move the fingers into a session of word vomit, or do I simply type what is recent and let your imagination fill in the rest-if that imagination makes me a new Disney princess…I’m your new BFF.

Yes, I still have RRP. Yes, I still have a trach. Yes, I still am making the short and quick Atlanta trek down to Emory for infusions. (Stop laughing, pick yourself up off of the floor…cause we all know short and quick in Atlanta is an Elf worthy “Sitting on a throne of lies.” Yes, I still dream of that elusive loud and audible voice. So, here I go….

Somewhere along the way recently, I lost count on my infusions. I think I’m at thirteen, but maybe it’s fourteen. It’s one of those, and at my age, I’ll just roll with both of them. One is right, so I’m at fifty-fifty for being correct. Pretty good odds at pre-menopausal age. My most recent infusion was a week ago. Infusion clinic staff have a gift…and it is the gift of somehow remembering every name that comes into the clinic. It makes a cruddy day much easier to deal with…you feel like you are with people who truly care about you and your outcome. I’ve been having a fairly decent level of pain for several weeks now. Cardiac, nope. Viral or bacterial related, nope. A new CT/PET did not show anything that would cause pain. The most logical explanation at this point is that it is a rare side-effect of the Avastin. After speaking to my oncologist and to another health provider at Hopkins, I now know two other cases who had similar pain. My oncologist has decided to go to a six week infusion interval in an attempt to see if that helps the pain. My pulmonary has also added in a gastro appointment just to rule out silent GERD/reflux. She doesn’t think that it is gastro related pain, but it is a fairly inexpensive process to rule out, so add that to my holiday joy! On a side note, I’ve learned not to fear the thin envelopes that come from BCBS to indicate my “Claim is under review.” It’s only money, right? An unpaid claim would just be a tiny expense of 16K…..do they take the credit card that comes with business Barbie???

All in all, things have been stable since March. Laryngeal disease is non-existent right now. Tracheal has had some shrinkage, but nothing new. (My tracheal disease load was increasing rapidly pre-infusion days, so this is very good news.) Pulmonary, we may be seeing the first signs of shrinkage…we won’t know for sure until the next scan in late winter/early spring. We have stable lungs with no new disease, and we are celebrating that. For pulmonary RRP, that is sometimes the best outcome. I do spend far too much time wondering if I am converting and we are missing it….I struggle to trust the scans. I’ve had to post far too many “Our Warrior community has lost another Warrior…” on social media. The disease can become such a daily part of your life, it’s easy to forget that is a disease that acts as a thief…and sometimes that theft is a life. Each death being so personal to everyone in our community-a community that is an extension of your family.

With my future unknown, I know it’s a day to day process. Yet, I also know that as a human, I look at the mountain that seems so impossible on the bad days. Then, something new in research will be published, and hope breathes another day. Most recently, we are seeing simply incredible news out of Australia. Australia Sees Dramatic Drop In New RRP Cases This brings tears, joy, hope to our community. While the cure is still elusive, we know we have a drug in our arsenal that can help to end new cases of RRP….and we cannot preach it loud enough….Gardasil works. Gardasil saves lives. Gardasil can end new RRP cases. Do not be fooled by fake science. It’s safe and effective. Don’t be fooled by the Christian Purity message that virginity will prevent HPV infection…it won’t. 80% of adults by the age of 50 have had HPV exposure. 8 out of 10. (I am saying this as a Christian-get your children vaccinated with Gardasil. Virginity is not protection. Don’t have that guilt one day if your child is diagnosed with a HPV related cancer. Don’t have that guilt one day if your grandchild is diagnosed with RRP.) In October 2018, in the US, the FDA approved a new age range for Gardasil vaccinations. Now, if you are 9-45 (male or female), the vaccination is now approved for you to request. Thanks to ACA, it is a required payment vaccination. Insurance based on ACA must provide this vaccination, just as they do others such as Polio and MMR. 80% of cervical cancers are caused by HPV…..80%. Many men/women will never know they have been infected with HPV. No symptoms does not mean no infection. Know the facts. Ask me. Go to the CDC website: CDC HPV

I’m sorry, I digressed….but we are just so eager to reach the goal-line of no new RRP cases. No child, no adult should ever have to endure hundreds of OR interventions….ever. Not for a virus we now know we can prevent. If you could vaccinate your child against cancer, would you? Of course you would, so don’t delay on Gardasil vaccinations. It’s literally a cancer vaccine. Do it for me….do it for my RRP community.

Back to the update. I’m excited to say we now have TWO active pharmaceutical trials in the US. One at Mass General the other is a new one at the NIH. Community, these trials need you. For us to find that elusive cure, we must be willing to be trial participants. Contact me if would like more information on the trials or what being in a NIH trial is like.

So, yes, I am somewhat in the same holding pattern, but holding pattern with NO OR IN TWELVE MONTHS….I’ll take that deal.

In October, I was so fortunate to be able to be part of RRP Atlanta 2018. Being able to spend a weekend with my fellow Warrior was medicine to my soul. Then, being able to take part in the AAO-HNSF as a RRPF representative….gosh…I love this. I shared recently that I think my heart grows a millions times over when I’m in the trenches for RRP. It’s such an honor to be entrusted with any part of the process towards awareness/better treatments/cure/education. One of the advocacy highlights of my year was being selected as a scholarship recipient for the NORD Summit in October. It has already proven to be an invaluable conference for the RRPFcommunity.

For #GivingTuesday, the RRPF shared some of our Warrior stories. If you haven’t already, travel over to Facebook to RRPF ORG and scroll down for the stories.

Merry Christmas, Happy Holidays, Happy Festivus…whatever it is that you celebrate during this season….and if you need an end of the year donation cause…find us on Facebook at @rrpforg Help us find the cure….help us educate our community and the world around us.

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This will be the first entry in the series that will follow my journey in the use of systemic Bevacizumab (Avastin). I hope to mix the science with some humor and maybe even a dash or two of joy/hope.

While I breathe, I hope.

Episode One.

One of the first pharmaceutical treatment ideas that was discussed after my lack of response in the NIH trial was pursuing systemic use of Bevacizumab What is Avastin? Now, you are likely aware of the hurdles and obstacles that walked out in front of my bus..primarily that of insurance approval, followed by the amount of work that I, as a patient, was having to invest into the idea. Off-label, especially with no clinical trial data, is a hurdle most insurance carriers simply don’t want to be part of-evidence based medicine is the name of the insurance game. With a few papers on limited use as the only “pay for this” ammunition, it’s been an uphill battle while also wearing a fifty pound backpack. (Which basically is the same as a “sloth.”

Fast forward to this past week. Background on most recent surgery-my tracheal disease is in high gear.

December 2017 Tracheal Disease

I’ve wanted to go down this therapy road for months now, so to see the disease in such an aggressive phase, as well as the pulmonary involvement, I became even more determined to make this happen. Emory has an outstanding RRP practice. What I learned this week is that they also have an outstanding Head/Neck Oncologist. Dr. Saba believes in this idea. He agrees with this option for my case. I’ll be his second RRP patient on this protocol. The ball started rolling and in warp speed….a schedule is set, pending a stable CT scan. I’m more important than the insurance hoop….they will get me over that hoop-not my burden. We have a plan. The plan is in place and I have one job-show up. No hours spent working for approval, no hours spent digging for every shred of evidence I can find in how this treatment has worked in several RRP patients….my only concern is making sure I am ready for infusion day and following my “to do” list. (Well, and staying away from Dr. Google on side-effects, possible complications-little information is available on side-effects, complications in the use of Avastin as a stand alone treatment.)

There’s anxiety over what to expect, as we all react in such an individualized way to any medication, but especially those used in the oncology field. Will I be as sensitive to this drug as I was to Avelumab? Avastin is a VEGF VEGF How It Works, while Avelumab was an immunotherapy (PDL-1 inhibitor How Do PDL-1 Inhibitors Work). There’s anxiety over my pitiful veins holding up, but a port is something we want to avoid due to increased infection risk. (Ha, well, maybe the anxiety is over the IV in general….I loathe those little creatures.) A prayer for urine proteins to stay normal, blood pressure to not spike, and for no bleeding issues to arise! (We do know that my Benadryl push needs to be diluted and slow, so that’s one less issue to worry about on infusion days! Also, am I the only person on the planet that drug doesn’t render comatose?)

So, there you have it…..scan, three infusions, scan, if regression-repeat and then work into a maintenance routine.

While on Avastin, there will not be any OR procedures. Hopefully, this will allow a long period of maintenance, a much needed break from the OR, a break from this chronic cough, and will work to prevent anything from converting. Will it kill the virus? No. Will it hopefully give me some relief until science catches up to the mechanism of the virus-hopefully.

I’ve included links to the few papers we have available on systemic use of Bevacizumab (Avastin) for those with aggressive tracheal/pulmonary RRP that may be interested.